Tuesday, May 29, 2012

Yet another big update

I’m sorry I’ve neglected the blog for the past couple of weeks.  We’ve had A LOT going on and I just didn’t have the time to post anything.

First of all, thank you!  Thank you for your kind emails, calls and prayers with heartfelt concern over Ella’s skin.  She is looking much better and seems to be on the mend.  We still have some healing to go, but at least now she can walk around and move without a lot of pain.

GiGi and Paw Paw arrived on Wednesday May 16.  Thursday the 17th was Ella’s last day of preschool.  I still can’t believe it!  How in the world did she become a kindergartener so quickly?  I kept telling her that I decided she wasn’t allowed to graduate and she would stay with Mrs. Bull at church school forever.  She’s not allowed to turn 5 years old.  Ella insists that she MUST turn 5 and has to go to big kid school!  She can’t just stay a baby!

Thursday night was preschool graduation.  I fully expected to be a complete mess and cry the entire night…shockingly that didn’t happen.  I was able to hold back my tears and focus on how proud I am of Ella and how far she’s come.  Her biggest highlight was that the preschool gave her a real bible, not a kids story bible and not a New Testament…a REAL bible.  She’s been bringing it to church every Sunday and asks daddy to read stories from it to her every night.

 GiGi and Paw Paw celebrated their 42nd wedding anniversary while they were here…42 years!!!  I knew we had to do something special for them to celebrate, so we asked Metti to make us a traditional Ethiopian meal.  GiGi had eaten at an Ethiopian restaurant one time, but this was a new experience for the rest of us.  You know when you have a food that is so good that your mouth craves it for 2 days afterward…that was how good this food was!  Metti made a chicken dish that had the most amazing red sauce!  It was definitely spicy even though she said she toned it down for us, but, boy was it delicious!  She also made a vegetable dish and a beef dish (because she knows Ella loves beef so much).  The funniest part was when I was setting the table and asked her what silverware we needed.  She smiled and said, “None, you eat this with your hands.”  If you haven’t had Ethiopian food, they have this bread called injera and you use the bread to kind of grab your food, then wrap it around the food to eat it.  At the end of the meal the rest of us had hands covered in food, but Metti’s hands were as clean as they were before dinner.  I guess we need more practice eating with injera.  To finish things off she went to an Ethiopian bakery and bought a white chocolate cake.  Oh. My. Word.
We had a great week with GiGi and Paw Paw.  Ella, GiGi and Paw Paw played games, sang songs, read books, danced and anything else they decided was fun.  Ella is growing up so much and really enjoyed their company.

GiGi and Paw Paw left on Thursday May 24th, but we couldn’t stay sad for long.  As we were driving home from dropping them off at the airport, Grammy Janet called to say she was almost at our house.  She arrived 10 minutes later.  Ella is a lucky girl to get to see both sides of her grandparents in the same week!  Unfortunately Grammy could only stay for 2 nights, but we were glad she could come by to see us.

In other exciting Murray news, Ella has officially gained 4 pounds…this puts her in the 30’s!  WOO HOO!!!  This is the biggest Ella has ever been.  You can actually see the chunk on her and we love every bit of it.  I know some parents worry about their kids because they’re so big, and people are very quick to talk about how big some kids are.  Trust me, if given the choice between the too skinny kid and the chunky kid…take the chunky kid.  With her new belly button Ella has gained 4 pounds in 4 weeks.  And even better that that is that if I want her to eat something but she doesn’t want to, I just put it through her belly button.  She’s been getting fruits and vegetables (which she hardly touches) and she’s been getting full-fat, unsweetened Greek yogurt.  The color of her skin is amazing and her skin that doesn’t have boo boos looks better than it has since she was a baby.  She has more energy and even her personal trainer (yes, she has a personal trainer) can’t believe how much better she’s doing with her exercises.  All in all, we’re big fans of the g-tube.

Unfortunately we’re still struggling with her iron levels.  We go in again later this week so hopefully we’ll finally see her up a bit more.

Also, (see, I told you a lot has happened) Joe and I had a meeting with Ella’s new Elementary school on Tuesday May 22nd and we are very confident about next year.  Before we started meeting with the school we had been working with another organization in town that helps kids with special needs.  They have been helpful throughout her preschool career, but we really felt strongly that Ella needs a one-on-one aide to attend kindergarten and they were hesitant to recommend one for her.  It’s a very large school (about 700 students and 6 kindergarten classes), there are a lot of kids who speak English as a second language and some who don’t know English at all (there are approximately 82 languages represented at the school).  With Ella being  new to the school, we wanted to make sure she had someone whose job was just to help her and protect her during the day.  Fortunately the school was in our camp and really pushed for the one-on-one aide.  Also fortunately, Joe has 2 very important letters behind his name (JD) and had done a lot of research on special needs law and had talked to others who work in special needs law, so we walked into that meeting knowing Ella’s rights.

That said, I have to give props to the school.  They have been wonderful!  The school received a copy of a DVD that Debra of America (the EB organization) produced for school administrators, and the principle had everyone watch it.  If there is a teacher, nurse or administrator that will come in contact with Ella, they have watched the video.  A couple of months ago the principle asked us to bring Ella in to meet everyone and they all wanted to talk with us.  We sat in their conference room with about 10 people and they all asked questions about Ella and her EB.  It is evident that they want to see Ella succeed and will do anything they need to to ensure that happens.  Joe and I feel so blessed to have this neighborhood school so close (just 2 blocks away) and we know that Ella will have a great year.  Ella is SO excited to attend kindergarten and "big kid school."  She talks about it every day and has started doing a lot more things on her own because she's almost 5.

Last but certainly not least, we have a reader in our house!  Ok, she's not reading novels yet, and she still needs help with some words, but she fully understands the concept of reading and knows how to sound out words.  GiGi worked with her a lot while she was here, and now Ella can sound out most words she comes across.  She is very excited about this new development, as are we.  Last night we were playing a rhyming game on the computer and Ella needed to find the words that rhymed with cat.  She looked at her list of options and before I could say anything she just started reading them, "Fox, no.  Fish, no.  Hat, YES!"  It took me a minute because I was so shocked by this.  I've known for a long time that she's been soaking in reading.  Ella is one of those kids that observes for a long time and just soaks in all of the information, then once she feels like she has it all figured out she'll just bust out with it.  I knew in my head that reading would happen that way.  She watches reading videos and watches shows like Martha Speaks, Word World, Super Why and The Electric Company and I knew she was grasping all of the concepts of reading (the English language is actually pretty confusing).  So I knew that one day when she had it all figured out she'd just start reading, but I was still completely shocked.  Last night SHE read to JOE, instead of the other way around.

I think that sums up all the good news we’ve had the last 2 weeks.  I am now mapping out our summer plans and look forward to spending major quality time with my girl.

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